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Friday, July 19, 2013

Their Lips are Tied

I'm trying to laugh about it- see? I really am. I'm trying to laugh because it all makes me want to cry, and scream, and roll into a tight ball of stress.

I actually have done two of those things in the past week, but in the end, I changed course and did another, better thing: with the help of Tom, I became proactive.

***

Sometime last week, a Facebook friend posted a picture of her child's mouth, his lip pulled upward to reveal his upper gum line, with a comment to the effect of, "T has a lip tie. Now I know why he wouldn't breastfeed." In the picture, I could see that there was a membrane extending from the inside of the lip to down between the child's front teeth. How odd, I thought to myself. I had never seen or heard of a lip tie before. What I had heard of were tongue ties, which I assumed were always blatantly obvious, always clipped right away, and never a problem again.

I passed right by the picture, continued with my browsing. However, something made it fester in my mind over the next few days. I started thinking about how odd Amelia's gums had always looked to me, and how much difficulty I'd had getting my kids started with breastfeeding- even the ones who ultimately seemed to excel at it (for awhile, anyway).

So, I lifted up Amelia's lip, and there it was.

A tie. And a pretty substantial one, at that.

This prompted me to check the others. Abby has a minor one that ends before her teeth begin. Michael's, however, looks near as serious as Amelia's.

I was stunned.

Then, I was curious.

As I consulted Dr. Google, my heart sank in my chest. I started reading about the various difficulties that infants with lip and tongue ties can face, especially if they breastfeed. Though I understood how perilous an approach seeking legitimate information on the internet can be, I found well-reasoned arguments and personal stories via various blog posts, like the ones written by Mommypotamus and A Warrior Mom. I even found an entire blog dedicated to the subject. Perhaps most convincingly, however, I found (through the many mentions across multiple sites) a website and series of articles written by Dr. Lawrence Kotlow, a pediatric dentist in Albany, NY.

I felt like a whole new chapter of Michael's First Year story was being revealed. I feared that in missing something so seemingly minor and small, in actuality, I missed something huge, possibly life-changing. Looking back, it all makes sense. Like Mia's, his latch did not seal. He gulped air and dribbled as he fed. He seemed frequently unsatisfied. In the end, he failed to adequately gain. I blamed so much of it on the reflux, but what if there was more to it than that?

When he started on solids, he seemed unable to move the food to the back of his throat to swallow. When he should have babbled, he did not. When he finally started vocalizing, he skipped the "d" sound altogether, which should have been the easiest to attempt. I still don't know for sure if he is or was tongue-tied. I do know that lip- and tongue-ties tend to appear together. I do know that he has a very visible membrane beneath his tongue. It is fairly flexible now, but this may be simply the result of time and stretching.

Clearest of all, however, is this fact: He has a lip tie, and so does his sister.

The question was, what to do about it? Mia has a four-month appointment coming up, but given the severity of her gas issues, and the possibility that there was a resolution to them, I did not want to wait that long. I went in on Monday and had her seen by the pediatrician.

As I spoke about it to Mia's doctor, it was hard not to swallow a little resentment. My reading- along with the experience of questioning both her regular pediatrician and the one rounding at the hospital when she was born about the odd appearance of her gums and being given no particularly informed responses- left me unsurprised that he had no insight to provide. He was pleasant, agreed that it was certainly possible that the tie might be an issue, and gave me a referral to an ENT, but inside I was screaming, Why didn't you check for it? Why didn't you mention it yourself, then?

The ENT, who I saw on Tuesday, was slightly more helpful. He said that the attachment was significant, and that it was his determination that we should take action. He was not concerned with her tongue, since it extends past her lower gum line, but did not comment on whether it was tethered to any degree.

Then he explained what he planned to do. We'd have to take Mia to a hospital, have her put under general anesthesia, and he would cut the membrane with a scalpel. I was so floored by the mention of anesthesia that I couldn't pull up any useful information out of my head to guide me in a follow-up interrogation. All I managed to mutter was, "Couldn't you use a laser?" His response to that was that lasers took longer, and burned, so they would hurt more. When I questioned the anesthesia, his eyes grew wide and he asked, "How else do you think she'd let us proceed?"

I didn't want to do nothing, so I went along with what he said. He told me to wait for a phone call from the scheduling office, which would come soon. I returned home with a heavy heart, feeling uneasy. However, I felt it was smarter to trust in the doctors right in front of me than the unreliable interwebs.

Then came the phone call. It wasn't even to schedule the procedure, but to inform me that our name had been submitted, and that we'd be contacted again to set a date. In six to eight weeks.

In six to eight weeks, I could start losing my supply. I'm pretty sure that's the point at which it happened with Michael, and since his difficulties with weight gain predated my last pregnancy, I know that the pregnancy wasn't to blame. Beyond that, I tried to picture six to eight more weeks of hourly feeds, sudden cries of pain from Mia, repeated sessions of leg-pumping and straining to relieve the pressure of that awful, awful gas. And now, to top it all off, sleep issues, which I can't necessarily blame on the gas, but I can't necessarily not blame, either.

I got back on the internet. Over and over again I saw it repeated: lasers are the way to go; cutting can leave scar tissue. General anesthesia is unnecessary (never mind that it scares me to death when it concerns my tiny, tiny baby). I had a heart-to-heart with Tom, and we formulated a plan. We contacted Dr. Kotlow, who responded with lightning speed. He referred us to a Dr. Robert Marcus in Baltimore, a pediatric dentist whom he personally trained.

Dr. Marcus has been equally responsive, and we are now making arrangements to take some real, solid action as early as this coming Monday. Action that will not require outpatient hospitalization, general anesthesia, or sutures.

In our discussions, Tom and I debated whether or not to have just Mia seen, or to include Michael, as well. Ultimately, I sent pictures of both children to Dr. Marcus, who feels that they both have substantial attachments worth releasing. Though Michael is no longer breastfeeding, appears to be eating well, and has started to speak, my current concern is with the gap that is being formed between his front teeth in a mouth already hurting for sufficient space. I'd also like to ensure that if there ever was a tongue tie, it has sufficiently resolved itself.

I still feel an ache when I think of what Michael possibly lost, not having gotten the diagnosis from the beginning. It feels good though, to be doing something for him now.

Even better: possibly shielding his sister from the same fate.

***

Spoiler- Michael and Amelia both handled the procedure well, and have benefited from it (Mia, in particular). A follow-up post outlining their first week's progress may be found here.

4 comments:

Both my Cabin Boys have this as well. The membrane is called a frenulum (generally meaning a membrane that restricts the movement of a part or organ). Cabin Boy #1s was substantial enough that his teeth grew in with a large gap, so we had the dentist clip it. It was very simple, no anesthesia, no lasers, and he took it really well. Since the dentist didn't have to clip the gum itself, there is no scarring. We have yet to take Cabin Boy #2 in to have his clipped, because he hasn't had any issues because of it. It's something I'll definitely been keeping an eye on with the coming baby though, and will make sure the dentist takes note of when we take the kids in for their next dental appointments. Don't stress too much about it. I do hope they get it taken care of quickly for you guys!

Hi Sharon- do you have a follow-up regarding your experience with Dr. Marcu?. My daughter has a significant lip tie and it took me until she was 11 months old to discover it (wondering why I didn't catch it sooner!). I called Dr. Kotlow's office and was also referred to Dr. Marcus. We have an appointment next Thursday.

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About Me

I'm a stay-at-home mom of three children, three and under, and have been married to my wonderful husband Tom for almost three-and-a-half years.

I started off blogging to see if I could, continued for love of writing and my (admittedly amateur-level) photography hobby, but mostly I keep on to help me maintain some sanity while preserving the random and poignant moments that abound in the midst of all the beautiful chaos.